Patient Grief and Support

The speed and suddenness of an ependymoma diagnosis can be utterly overwhelming for all involved. Normal routines, expectations, and hopes for the future are often put on hold. As you face difficult treatment decisions or learn to cope with frightening symptoms, you may feel as if you are just getting by on a day-to-day basis. The grieving process often begins at the time of diagnosis.

Brain tumors are unique in that they can cause cognitive deficits or personality changes. It is normal to mourn these changes, especially because this is a time when you most need the support of your loved one. Expressing this loss can be difficult, and people often feel guilty about having such feelings. It is important to remember that you can feel relief that the person is still with you, but, at the same time, grieve the fact that they are not the same person you once knew. There is no right or wrong way to express, or feel, grief. It is an individual process influenced by many factors, such as your relationship with the patient, your role in their illness, spiritual or religious beliefs, and your past experience with loss.

Sadness is expected with grieving, but people are often surprised at other feelings that accompany this process, including anger, guilt, relief, confusion, doubt, anxiety, or rage. Playing the role of advocate and caregiver is emotionally and physically exhausting – it is not abnormal or surprising to feel relief that your struggle, and that of your loved one, is over. Anger is also a normal part of bereavement. Caregivers often receive little validation for their role or for the difficult decisions they may have to make. The isolating effects of coping with a brain tumor diagnosis can leave you feeling frustrated during and after the illness. Because anger, frustration, and loss are often expressed in the safety of intimate relationships, it is important to get support during this time. For example, parents who have lost a child to a brain tumor may not realize that they are taking their feeling out on each other. Vital support can be found on an individual basis, with a therapist or counselor, or through a caregiver or bereavement support group.

Many wonder what happens, or what to expect, during the late stages of the illness. It often takes great courage to ask these hard questions. The unpredictability of this illness is very difficult. You should not feel guilty, or feel you have given up hope, by acknowledging that you want to be prepared. During this time in particular, you must learn to distinguish between what you can control and what you cannot. For example, patients may waiver between confusion and clarity – this is known as fluctuations in mental status. These fluctuations are not a result of anything you have or have not done. Although it can be difficult to accept, you are powerless over many effects of this illness.

People who have been caregivers for a long time are left wondering: What will I do now? It is now your turn to take care of yourself. This is often easier said than done, and it can take time to figure out what exactly this entails. As long as it is healing for you, tell your story again and again. It can be incredibly supportive to get in touch with people who have been through this because they will understand what you are experiencing. If it feels like it will be helpful, reach out to others. Although it’s not for everyone, some find it therapeutic to become an advocate, volunteer, or public speaker. Experience your loss on your own terms: it can be difficult but remind yourself that you do not have to be inspirational to others, nor do you have to conquer your grief. Most importantly, remember that it is not a betrayal to your loved one to go on living, or to be happy, after they have died. This is what they would have wanted for you.